When to move to care home

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My mother (76) was diagnosed with dementia in 2022. Currently lives in her own home with my sister who has decided that she cannot cope with this situation anymore. I am getting increasing pressure from my sister and the wider family to move mum into a home. I have her to stay with us regularly so I feel that I have a good grasp of her care needs and I do not recognise a lot of the behaviours that they mention. I of course accept that my sister does not need to continue to live with my mother but it seems very extreme to move to care home in my opinion. She does not require any personal care for example which would be the main tipping point in my opinion.
However I am not sure what the alternative is. We cannot have her to live with us and mum has become terrified of being on her own so a situation with carers coming in a few times a day would not work. I've considered live in care but Mums only assert his her home so I'm not sure how we'd pay for this or even if it's the right thing. She has become very fearful of moving to a home which does not help matters.
Does anyone have any advice on how to make a decision about whether it's the right time to move to residential care? My concern is that mum loves going out and about and may feel very confined by a home. She also is reluctant to join in with any kind of dementia specific activity as we have tried to take her to various groups etc. I also worry about her being put on a dementia specific floor and becoming upset by the behaviours of the other residents, shouting out at night etc.
Does anyone have any experience of a relative like this who ended up enjoying a home? Is it best to move her whilst she still has some memory, so that she can get settled? Are there any alternatives for care at home that I haven't thought of? Any advice would be most welcome. Thank you.

If your DS won’t live with her any more, and no one else will have her, and DM won’t live alone, then a care home is the only answer.
The dementia hime near me takes them on outings, and relatives take them out. I think you need to look at more
A relative of mine had to go in a home as their behaviour wasn’t acceptable, and they actually thrived in there, and lasted longer than I thought they would.

My concern is that mum loves going out and about and may feel very confined by a home.

Does she still go out and about herself? If she can do this successfully then she doesn't need a care home. If she is always accompanied then this can continue when she's in a care home. People do take their relatives out regularly

If your DM is 'terrified of being on her own' then with no other option, it's time. It's not fair for family members with lives, jobs and families of their own to plug that gap. And surely your DM wouldn't expect that indefinitely anyway?!
If her home is her only asset it will be sold to pay.
Having just watched MIL move into care after FIL died it is a big upheaval, and costly, but unfortunately the wants and needs of someone toward the end of their live don't trump everyone else's. And to know she is safe as the inevitable deterioration progresses is priceless. Sadly in such cases, good enough has to do.

Thanks for your responses. It does seem like the only solution. I guess I just feel disappointed that we were unable to organise a solution as a family to keep her in her own home. We had offered to have her 50% of the time but everyone else wants to step back completely. DS won't even commit to visiting regularly once she is in a care home.
I would say her ability to get out and about independently has reduced massively and it's now only really short stroll around the block or to a local shop that she can do. Mainly it is other people taking her out. I will obviously continue to do this as much as I can once she is in a home but it won't be daily. Everyone else has completely backed out of providing any care so it will only be me who will reliably to this.
We've looked at a few homes already and I've found that whilst they often say they take the residents out and about when you look at this in greater depth it's actually very unfrequent.
Does anyone have experience of a home where they really do get them out lots? Even if it is just a walk to the shops. Perhaps they are out there and we need to look harder

Does anyone have any experience of a relative like this who ended up enjoying a home? Is it best to move her whilst she still has some memory, so that she can get settled?

Ime you would struggle to get a place in a home. I had to fight to get a home for elderly relative who needed 24 hour care. It wasn't my choice to put them in a home even though I have POA which had been in place for many years prior to illness. I was stunned as I thought when the time came I would be in control but actually it was down to social work etc and I had very little input. Relative was self funded

My mum's care home has different activities every day. Some involve going out, some are in house. They have things like: writing workshops, fashion shows, mini ponies visiting, trips to the seaside, tai chi, musical memories, piano concerts, craft activities. The care home will ensure that anyone who wants to access the activity can do so, even if they are happening in a different floor ( ie if the are not really for the people with dementia).

Your mum may find she has a wide and varied selection of things to do in a care home and therefore the going out every day becomes less of a priority.

I think if your ds is stepping back completely, she's telling you she's reached her absolute limits. Maybe she thinks this is the only way to persuade you the situation isn't viable any more.

We have considered having her come to live with us but ultimately felt that it wasn't fair on my DC to have to watch their much loved grandmother deteriorate like that.
For context DS is single with no children. Has leached off my mother financially throughout her life and often had periods of living at home. Is now trying to spin the story that she came back from living abroad to care for my mother, when really it was because she had run out of money. It is only now in the last year that it has become inconvenient to her; that she is saying that she wants to move out. Although where on earth she is going to go and with what money I am not sure.
Anyway ultimately I do accept that nobody has to provide care if they don't want to. It's just very hard to have to put a parent in care when you don't feel that they are at that stage yet.

Also for more context I have always had my mother come and stay with me for significant periods of time to give my sister a break, so I do feel I have a very clear and accurate idea of her care needs.
@nicknot yes I do wonder if she will even pass the threshold for the social services assessment for a care home. Perhaps this will be the deciding point. My sister is convinced that she will but I'm not so sure. Presumably if they are self funding they can go into a care home regardless?
I think my sister might be hoping that she can stay on in the house and my mother goes into a state home but from what I've read there is quite strict criteria for this( over 60 etc) which my sister does not meet

we seem to be in a very similar situation ! our DM is physically pretty healthy but has in reality quite advanced dementia. ( you wouldn’t know it when you first meet her) No huge need for personal care although if not encouraged won’t wash or change to bed clothes at night . Help with appropriate dressing .We manage everything for her. She wants to go out all the time and she has become terrified of being alone at all. Respectfully Îd listen to your sister you have to live with it daily to understand how impacted they are imo especially when their lives are being organized in the background so from the outside it looks ok Îd go for a carehome with private carers taking her out regularly if it’s affordable.

From my personal experience, the time to make a move like this is shortly before it is absolutely necessary, as it gives the person time to adjust before they are very confused. Regarding going out, can you not take her out when you visit so that she gets to go out and see places? That's how we tackled it in our family.

If neither you nor your DSis are able to care for your DM, and assisted living/sheltered accommodation is not available/suitable, then it would be better settling her in to care home and for you both to sell her home to pay for her care.
We did this for DM and DAunt and took them out for lunch when we visited, although we later had lovely lunches at the home when going out/returning to the home became more difficult for them.

Did your relative not want to move to a home, and have capacity to refuse?

That's the only circumstance I can think of where social services would get involved with a self funder. Normally you just pick a place, they tell you when they have a room free, you take it.

OP, does your mum have capacity to decide where she lives? If so, she has to make the choice between a care home and living in her own onw house alone. Those are the 2 options. If she doesn't have capacity to make that choice she's not capable of living alone, so there is only 1 option.

@InaquandryIam
I hadn't thought of getting private carers to take her out from the home. This is an excellent idea. Is it something that lots of people do? Obviously we could do without the additional cost but in comparison to the care home charge a private carer isn't so much from what I understand.
Presumably it's not something that would be looked at negatively further down the line once we've run out of money and are no longer able to self fund?

Have you looked for any dementia day care centres nearby, that may be a short term solution. A neighbour went to one 3 days a week (£100 per day), they did day trips out a lot and had a full activity programme. He did respite care in a home when his daughter went on holiday and it went quite well, and not long after he has gone into a home full time and house has been sold to pay for it, unfortunately dementia care homes are very expensive, he is fit and can manage his personal hygiene, but needs clean clothes putting out.

@NoBinturongsHereMate

Did your relative not want to move to a home, and have capacity to refuse?

No capacity, no awareness of anything really and I had to fight tooth and nail to get her a place in a home. It took months.

I would ask for a care needs , capacity and financial assessment first before you make a decision, is there power of attorney in place, if not you can't just move her. She may be OK in assisted living or a residential home.

You have said that you are willing to have her 50% of the time but not full time due to the impact on your DC - surely they would see the decline in her if she is with you part-time. I had to move my dad into a care home when he was alive and moved my brother into one 2 years ago - no regrets as he is safe, warm and well fed - I did not want to be his full time carer - my life would have been over. It's very expensive and he is self financing - you can claim AA for those in care - it a difficult decision but a balancing act between those who are ill and those responsible for caring for them - it is very hard work. Good luck with your decision.

That's very odd. You'd need a DoL order if they didn't want to move, but otherwise it's nothing to do with social services if they aren't funding the place.

If the family are putting pressure on you to sort this do you have POA?
If not then whoever does will need to look into care homes, put mums name down on lists and put the house on the market.

If your mum is reluctant to move then I wonder if your sister just needs to move out so your mum realises she is going to be living alone? At the moment your mum probably doesn't see the need for anything to change.

Unless your sister owns half the house or is classed as a dependent then she won't be able to stay there if funds are needed for a care home

She would have to sell the property to fund going into a home. Make your sister aware of this, as she may change her mind when she realises this. I'd take her to a solicitor to get power of attorney, so you can sort out her finances and keep an eye on her bank account.

It’s what we’re hoping to do with our DM. We’re waiting for a room in a small home (with a great reputation.) It doesn’t have a cinema or anything so it’s a bit cheaper than the big ones but we think a family atmosphere will suit DM better .It’s not for profit and has been going decades . We’re planning on using the extra budget for outings with carers ( dementia club, lunch, shopping things she enjoys atm) wish us luck!

Yes I have POA.
@MissMoneyFairy I think you're right. We need to get all those assessments done as a first step.
I don't know why my sister doesn't just move out. In many ways this might force the situation and make it easier. I do suspect she has got some advice from somewhere and thinks she will be able to stay in the house. From what I have read on the criteria for this it is possible that she might be classed as a dependent, as she has had health issues and may be on some of the qualifying benefits, I'm not sure.
However, the idea of putting mum into a state care home makes me very anxious. Or are they actually not that bad?

In a rush so sorry haven't read all the comments. One of the (many) issues with dementia is that you cannot predict when things will deteriorate so that eg they are out on their own and forget their way back. Or go out without key/phone:/tracking pendant etc. Might be ok one day, and not the next.

I was very anti care home, forced into it by a need for temporary care for recovery, but became apparent they couldn't care for themselves so became a permanent arrangement. Of course I'd rather they were at home but the reality is it's not possible. Look at lots of homes with an open mind.

The one guarantee with dementia is that it will get worse. Sorry to be so blunt, it's very hard for relatives I know. I look at it as keeping them safe, well cared for with more stimulation than if they were home mainly alone or with a single carer.

There are some lovely homes, some bad. The private ones can be all bells and whistles but you need to look beyond that, when you say a state carehome do you mean a council run home which is financially different, she may have to pay, is she claiming attendance allowance, this can go towards private fees. There is an extra care scheme which you could look at, they are flats or bedsits with 24hr care on site if needed, often they are rental only and need a referral.